Terminally Ill Mother of Four Says Health Insurance Company Told Her She Could End Her Life for $1.20

Stephanie Packer testifies Tuesday, June 25, 2019 before the Joint Committee on Public Health of the Massachusetts Legislature at Gardner Auditorium at the Massachusetts State House in Boston. Screenshot.

Editor’s Note: Stephanie Packer, a mother of four in her mid-30s who lives in California, testified Tuesday, June 25, 2019 while sitting in a wheelchair with an oxygen tube in her nostrils before the Massachusetts Legislature’s Joint Committee on Public Health about a proposed bill that would legalize physician-assisted suicide in Massachusetts (Senate Bill 1208).

Packer campaigned against a physician-assisted suicide law in California that was enacted in June 2016. Soon after the law took effect, she ran into a problem with her health insurance company, according to an October 2016 column in The New York Post. A new treatment recommended by her doctor was initially denied coverage, although eventually approved.

Below is a transcript of what Packer said on Beacon Hill on Tuesday, starting with the first audible words picked up by the microphone, shortly after she began speaking.

Stephanie Packer:

I was diagnosed with a terminal illness in 2012. I had, ah, my primary condition is Diffuse Scleroderma, and that has caused pulmonary fibrosis. And basically it’s a overproduction of collagen, and my internal organs begin to turn to stone – they all become scar tissue. And with that disease, it just kind of snowballs. As many chronic – people with chronic illnesses can tell you that several diseases come along with it, including, ah, I have paralysis of my GI tract, and I have developed, ah, trigeminal neuralgia, which is a specific [word missing] disease — and it’s referred to as a suicide disease, because half the patients will kill themselves within the first couple of years of having the disease.

And, ah, we fought really hard in California to avoid, ah, this kind of a law to be passed. And, ah, when California did enact the law, it took over, and I was notified that week that my medications were no longer going to be prescribed. They weren’t going to cover my pain medication, my oxygen, or my chemotherapy anymore. And all these things had previously been covered. And, ah, when I called the insurance company to try and find out what was going on – and you know, telling them the information that I had, and asked, you know, ‘What am I supposed to do next?’ – and, ah, they can’t give you those answers. They can just tell you what they cover, and what they don’t. And so, ah, naturally, after working on this in California, I asked them about the suicide drugs. And, ah, she put me on hold, and came back and told me that I would qualify for those medications if I paid my co-pay. My co-pay for those, ah, drugs was a dollar twenty cents.

I can’t — can’t describe what it feels like when someone tells you that they’re no longer going to pay for drugs that will extend your life significantly, that’ll give me more time with my kids, and my family, and all these adventures we haven’t gone on yet. But for a buck I can go ahead and make it stop if I kill myself.

And for a lot of people with economic problems – I’m, I’m terminally ill, I’m not working, and it’s really difficult to have a family. It’s really difficult for single individuals to get by. And, ahm, without money, without jobs, without these things, there’s absolutely no way I could have any kind of comfort care treated. My only option would be to suffer with no medication, or to pay a dollar, with my kids around me, and watch me give up.

And I do understand that that’s what some people want. There is so much fear. There is — there are really painful days, and it gets scary. But those days also make the good days great. When I can wake up and I’m able to do things, I’m able to experience so much more with my family and friends. That’s because I know what tomorrow might bring. And that’s something that I wouldn’t wish on anybody, but it’s also something that I’m very thankful for. It, ah, it changes how you look at everything.

Ah, after that, things have been up and down. Ahm, the last couple of years have been significantly difficult. And I ended up going on hospice. And, the doctors told me that really there wasn’t anything else they could do for me, because of how far the disease had progressed, and that, ahm, that within about six months, my disease, if it takes a normal close, would, would take my life. And, ahm, again, what, what do you say to that? You know, we’ve always been open with our kids and family and friends. That helps to talk about things, and helps them to deal with our reality. But, after having a bunch of hope and excited and these new things that we can try, to have that taken away and to have to come back, it affects far more than just me and how I feel. It affects how they look at life and look at the world around them, and how everyone else looks at people, and how we respond to others.

I was, thankfully, with a lot of creative doctors and amazing support and family, I was discharged from the hospice program, ah, just over two weeks ago, and was put back on palliative care, and was able to come and see all of you here today. And I ask that you really look into what this is doing. It, ahm, it’s taking a lot more away from people than you realize. And, ah, it’s — people should get to die how they choose. Those are realities. We need these choices. But the choices of others should not take away everyone else’s. So please, ah, take a look at it, and just get all of the information.

And thank you for, for talking about this and discussing it, because it is, it is needed. And I appreciate your time today.

Editor’s Note: The transcript above is based on an audio recording made by New Boston Post, taken from the Massachusetts Legislature’s live video feed of the hearing. For a video of a portion of Stephanie Packer’s testimony, click below on a link to the Facebook page of the Massachusetts Family Institute: